Trust in Health Care in the Time of COVID-19

Trust is foundational for the relationship between patients and clinicians. Patients often disclose profound personal information and trust this will remain confidential. Clinicians work to gain trust so patients are willing to accept their diagnoses and recommended treatments, including undergoing invasive procedures and taking medications indefinitely for chronic conditions. To achieve this level of trust, clinicians and health care systems must, above all, convince people that they put patients’ best interests above any financial or nonfinancial self-interest of their own.

However, trust in health care has declined during the past half-century. In a 1966 survey of adults in the US, 73% said they had great confidence in the leaders of the medical profession; but in a 2012 survey, only 34% said this.¹ Many factors are thought to contribute to the declining trust in clinicians and organized medicine, including the rise of managed care and related financial incentives, highly publicized conflicts of interest between clinicians and pharma and device manufacturers, limited time for communication, fragmentation of the patient-clinician relationship, and consumerism.^2,3 Trust in health care is even lower among Black persons and people of other communities who have experienced barriers to health care access, health care disparities, and overt racism within the health care system.⁴

The coronavirus disease (COVID-19) pandemic has created new threats to trust. This may have been inevitable when facing a novel pathogen that defied preconceived expectations (eg, spread from asymptomatic carriers), leading to rapid advances in scientific understanding of the disease and frequently changing recommendations for prevention and treatment. However, the preexisting distrust in science was exacerbated by conflicting messages, questionable treatments reported in research publications, concerns about political interference in public health recommendations and decisions regarding the efficacy of therapeutics, and pseudoscience and conspiracy theories. In addition, Black and Latino communities faced inadequate testing, financial barriers to care, and disproportionately high rates of COVID-19 cases and deaths, further threatening their trust in physicians, the health care system, public health, and science.⁵

In this issue of JAMA, 6 Viewpoint articles discuss threats to trust and ways to mitigate them.^6-11 Arora and colleagues⁶ discuss concerns related to medical misinformation and offer countervailing strategies at the clinical and societal level, ranging from use of social media to spread messages supporting vaccination to health systems holding community grand rounds to dispel myths about mammography. During the COVID-19 pandemic, discordant and conflicting information, including both genuine scientific controversies and medical misinformation, have made a coherent public health response difficult. In addition, these have created challenges for clinicians. What should clinicians do when patients refuse to wear masks because of concerns that doing so will cause difficulty breathing or when patients ask for prophylactic hydroxychloroquine?

Although the strategies proposed by Arora and colleagues⁶ may be helpful in the situations they outline, those strategies may be less effective when there is uncertainty around an emerging disease or when clinicians encounter patients with hardened beliefs (eg, masks being ineffective for preventing transmission of COVID-19). By its very nature, the language of science is questioning and nuanced, carefully noting threats to validity and limitations. In contrast, individuals and groups spreading “pseudoscience” speak with certainty, and their voices are amplified by social media. Patients can search the internet and easily find many “experts” spouting the identical message and spinning conspiracy theories about anyone who questions their position.¹² This provides “social proof” of the correctness of their ideas. The internet democratized access to scientific information, but social media has moved discourse away from scientific experts toward majority rule.

When clinicians are caring for patients with beliefs that are discordant from their own, dialogue is key. The Viewpoint by Khullar and colleagues⁷ emphasizes the importance of healing relationships for creating trust. Clinicians should begin by asking questions of patients rather than immediately trying to provide alternative information and recommendations. Trust must be earned by respecting patients’ knowledge, perspectives, and lived experience and inviting them into a conversation. This is difficult and time-consuming, but it is the best strategy to build trust. Yet, clinicians cannot do this in isolation. In their Viewpoint, Jain and colleagues⁸ emphasize the need for health care organizations to build trust with patients and the communities they serve and to make this a measurable strategic priority.

Montgomery and colleagues⁹ argue that these conversations also require transparency regarding conflicts of interest (COIs), and they discuss options for how to accomplish this. They recommend that the scope includes having clinicians disclose direct COIs (eg, royalties from medical devices, ownership in facilities, speaking fees from pharmaceutical companies) as well as indirect COIs (eg, working for organizations that receive financial support for participating in clinical trials). Medicine has made important strides toward more complete disclosure of COIs, although the effects on patient-clinician trust are not fully known. The difficulty is how and when to make disclosures to patients so the process provides transparency but does not adversely affect trust in the diagnosis and treatment recommendations made during a clinical encounter. Could disclosing that the health care organization receives financial support for participating in clinical trials of COVID-19 therapies raise patients’ concerns that recommendations from clinicians at that health care organization are biased? Disclosure of industry payments through the Open Payments program has been associated with decreased trust in physicians and the medical profession.¹³ Health care is at a disadvantage because there are no parallel requirements for transparency by the commentators on television, the internet, and social media promoting scientific fake news. As a result, claims from these sources may seem more unbiased than those from the health care system. Additional research is necessary to understand how best to disclose COIs in health care settings and the effects of disclosure on patients’ attitudes toward medical advice.

In their Viewpoint, Jain and colleagues⁸ emphasize that COIs breed distrust well beyond the individual clinician and health care systems. There are widespread concerns that politics have been inserted into the decision-making processes of governmental organizations, such as the Food and Drug Administration and the Centers for Disease Control and Prevention.¹⁴ This may lead both patients and clinicians to doubt the recommendations of governmental agencies regarding COVID-19 transmission mechanisms, personal protective equipment, risk-reduction measures, treatments, and vaccinations.⁸ Clinicians work at the leading edge of scientific and medical systems, translating scientific advances to the bedside. It may be difficult to achieve fully trusting patient-clinician relationships when neither clinicians nor patients have full trust in the recommendations on which prevention and treatment decisions are made. It will be essential to find ways to strengthen the independence of governmental scientific organizations from external pressures.

In their Viewpoint, Gupta and colleagues¹⁰ argue that trust is also undermined by the financial burdens and poor affordability of health care. In contrast, when health care systems work to increase affordability, provide support for those who struggle, and advocate for policies to expand insurance coverage and access to care, this can help restore the essential foundation of trust: that patients’ health is the primary concern of health care organizations. Accomplishing this will require a long-term effort, especially when trying to gain the trust of vulnerable populations who have experienced poor access to health care, lower quality of care, and racism within health care. A survey conducted in October 2020 to assess interest in receiving a COVID-19 vaccine found that only 43% of participating Black adults said they would “pursue a vaccine as soon as it was available” compared with 59% of White adults.¹⁵ Many of those who said they would decline mentioned the Tuskegee study, which followed the natural history of Black men with untreated syphilis for decades even after a treatment became available. Public health, health care leaders, and clinicians must work relentlessly to establish trust within these communities so past inequities do not create new ones due to refusal to take COVID-19 vaccinations and delays in seeking care for COVID-19. Gaining trust will require a broad, multifaceted approach, including expanding diversity within the scientific community, engaging communities in the design of clinical trials and the interpretation of results, and increasing the number of underrepresented minority groups in clinical trials.¹⁶

Despite these threats to trust, a recent Gallup poll found that the proportion of US residents who said that they had “quite a lot” or “a great deal” of confidence in the US medical system increased from 36% before the pandemic to 51% in July of 2020.¹⁷ The reasons for this are not clear. When it comes to trust, perhaps the greatest driver is visibly seeing clinicians and health care systems making heroic efforts to provide care regardless of personal risk and sometimes dying from providing care to patients with COVID-19. There is no better demonstration of what it means for clinicians and health care systems to put patients’ interest above their own, and this may be what matters most for patients’ trust. Finding ways to solidify these gains and use some of the strategies proposed in the articles in this issue of JAMA will be necessary to build on this fragile progress.

Corresponding Author: David W. Baker, MD, MPH, The Joint Commission, 1 Renaissance Blvd, Oakbrook Terrace, IL 60181 (dbaker@jointcommission.org).

Conflict of Interest Disclosures: None reported.